Somnolence Syndrome

I need to write something and this is the first time I actually have energy to do it, so here goes.

Last week I was feeling pretty good. I felt I was getting close to my baseline. Sure, I couldn't run more than two miles without a headache, but I was managing. I was going to a high intensity weight lifting class, I was going to golf lessons with my mom and more. This last Friday, I biked to work and back (6 miles one way). I did that last week and it seemed fine. When I got done with biking on Friday, I was TOTALLY spent. I sat in a chair and just couldn't get up. Luckily Aaron ordered a pizza, but I didn't even want to eat that because my stomach was a little weird.  I took a couple bites and that was it.  I think I even went to bed early.

Throughout the weekend, things got worse. I was doing enough to get by, but just barely.  I knew I needed to seed the garden. I took me a half hour sitting on the cough to just motivate me to start it.  I did, but that was the only major accomplishment that day.  Every day seemed a little worse. I became a little more nauseated and didn't feel like eating much at all (so not me!).  I was getting a little headache off/on, but my head just felt weird, like something different was happening.

On Monday I went to work and after work took a nap so I could make it to my golf instruction. Tuesday was hard.  It was my long day and I had to will myself to continue and went straight to bed afterwards.  On Wednesday I went to my doctor.  After 2 1/2 hours in her clinic, she wanted to hospitalize me for observation overnight.  I went to the ED where they did a bunch of testing (all normal), gave me a liter of fluid and sent me home that night.  They didn't feel there was need for hospitalization.

About this time and the next day, I just felt miserable. Yes my stomach hurt and I was nauseated, but that wasn't the worst part.  It was the apathy.  I have never felt this before and never so strong.  It was as if I didn't have the energy to do anything AND I didn't care about it. During my surgery and radiation, I always had the drive to improve and get better.  With this, I didn't.  I just wanted to sleep on the couch and call it good.  Going to the doctors, getting checked it and waiting was so taxing on my body. I couldn't even think about the next step of anything.  My normal doctor and her partner were afraid of a pituitary problem because the radiation did go through the pituitary.  They had to do more tests, but I couldn't do them until the next morning so on Thursday I was sent home to just rest and get worse. It was frustrating and heartbreaking. At this point I just wanted to go in the hospital and stay until they fixed me.

Yesterday afternoon I finally got ahold of my radiation oncologist. I tried to call her the last few days, but she wasn't getting the messages and she had a day off and just bad luck.  When she called me, she told me I had Somnolence Syndrome. This is something that happens to about 1% of adults with brain radiation. It starts at 4 weeks to 2 months and the main symptoms are sleepiness and apathy.  The good news is that it is temporary and it can be helped with steroids.

I have had one dose last night and one dose this morning and I feel, well more myself.  I don't have all my energy back, but I am not apathetic and do not want to sleep all the time. I am going in the right direction. 

It's weird to have something I have never even heard off, but I am glad there is treatment and glad it will be short lived.